MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

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Hi all, I'm new to this sithe and so far am finding it useful!

My husband, Mick, is considering stopping his pembro treatments due to severe pain and side effects...
Here is his history :
Original diagnosis of melanoma on his scalp, removed 4 times and received radiation (left a very nasty scar)
3 monthly checks with nothing showing for just over 1 year.
April 2014, melanoma discovered on his lungs and liver. Ipilimumab is started quickly. After 3rd treatment Mick's pituitary gland has swollen causing severe headaches and blurry vision. The pituitary gland no longer works so is put on cortisone tablets. 2 weeks later Mick gets colitis and losses 13 kilos. Is then put on massive doses of cortisone which cause major swelling.
Ipilimumab has finished and they put him on pembrolizumab. Soon after he has severe sinusitis for near 6 months. He gets avascular necrosis from long term steroid use and needs a core decompression to his hip.

But now he is in such severe pain through his bones, joints and muscles that he is struggling to walk, shower, sit, stand or do anything!
He currently takes hi doses of jurnista, lyrica, oxynorm and oxycontin but still the pain is unbearable.

Does anyone have any information on what would happen if he was too stop the pembro?

Sorry it's such a long post, but thank you for any responses.

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DZnDef's picture
Replies 2
Last reply 2/8/2016 - 8:36pm
Replies by: DZnDef, khubes

Hi everyone,

Things are moving fast with my brother.  His scans show numerous mets everywhere (easier to list where they aren't) including his brain.  The largest one in his brain is 1.2cm.  He has no symptoms.  The report doesn't list a total count.  He is with Kaiser and they just booked him an appointment to meet with a radiologist Wednesday (two days from now).  He hasn't even met with an oncologist yet (was supposed to be Friday but pushed back to the 23rd).

Anyway, I know individual radiologists have their own way of operating so I thought I would ask first here:  what are the radiology options for brain mets these days?  Pros and cons to each?  Personal experience?  Any and all guidance and information will be much appreciated.

You guys are awesome!

Maggie - Stage IV (lung mets unknown primary) since July 2012

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5dives's picture
Replies 19
Last reply 2/8/2016 - 8:03pm
Replies by: 5dives, Want2help, Janner, gregor913, WithinMySkin, Anonymous

Hi all,

I am 46, stage 3b, NED since July 2014. I see the derm every 3 mos and onc every 4. I'm treated at Loyola in Chicago. My doc is not one to do scans, so I've only ever had one, in preparation for a second opinion at MSKCC.

My health has been great, but lately I've had several easily dismissable symptoms. My node scar area has been aching (hasn't before), but nobody can feel a swelling. Headaches more than usual, but nothing that would cause concern.

I have had a persistent and irritating cough for 3 weeks. Yesterday I kicked up a fever, went to walk-in care, and was diagnosed with walking pneumonia. No chest x-ray.

In my understanding, many of you who have had lung mets have had no symptoms. I definitely have a fever and a gross cough.

I'm seeing my onc tomorrow (regularly scheduled). Should I be asking for a scan, or should I let it ride? I'm am very aware that this is most likely anxiety on my part.

Best to all of you, 


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scots's picture
Replies 2
Last reply 2/8/2016 - 11:44am
Replies by: scots, MoiraM

I have been told I need to get in Treatment as soon as possible, but where's the sense of urgency on the doctors / hospital part.  If I do not like what I here or they have limited or no options I have to start the whole process over. Contact a new specialist for an appointment go through all the paper to get files and reports and CDs of scans to the next doctor and all the while time is passing through my fingers .  I do not know why it's so hard for one doctor to refer you to another doctor and pass on all the records I spent weeks sending to them.  I know it's all on me but it would be nice to have some help and and cooperation between doctors. I have worked with my oncologist in town who is not a melanoma specialist.. He referred me to a Duke specialist. I'm waiting to hear if I qualify for a trial at Duke. I have also talked to NIH and sent them all my records. They said the TIL treatment is too risky for me. I also have an appointment at MSKCC in two weeks. Now they have all my records. With all that said I'm waiting.......I have liver mets after five years of NED. I have tried ippi and Opdivo but it did not work. I do not have the Brad mutation, I have a mekmutation which I have been told is rare.   I have filled out my profile if you would like to see detailed information on what I have done. I'm great full to a have great place like this to vent and find people in similar situations.




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Replies by: Fen, Scooby123, vivian, AshleyS

Please pray for my husband. Was scheduled to start IL2 tomorrow. Was admitted to hospital yesterday and not strong enough for treatment tomorrow. Multiple tumors in neck and various places, but larger ones near stomach and in small intestine have been causing severe pain last month or so and had lost almost 30 lbs since christmas which he didn't need to lose. Admitted due to not being able to eat or drink due to tumors pushing on those organs...

Meeting with surgeon and our melanoma team tomorrow. HaS had 2 small bowel resections in last 6 mos...not sure how many more he can take.

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gregor913's picture
Replies 4
Last reply 2/8/2016 - 8:01pm
Replies by: Brendan, Rocco, MoiraM, Scooby123

I did two infusions of yervoy 10mg. Third is on the 15th. This week my skin seems to be more itchy but there is no rash. Mostly arms, legs, and on the palms of my hands. When you guys had the yervoy itch did you have a rash or just itchy skin. It's very tolerable now. Greg

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DZnDef's picture
Replies 11
Last reply 2/8/2016 - 8:06pm

My brother was just diagnosed Stage IV melanoma and is meeting with an oncologist Friday.  I thought he might appreciate seeing a roll call.  Please let us know when you were diagnosed at stage IV and how you're doing now if you don't mind.

I was Stage IV July 2012 but misdiagnosed until my recurrence January 2014.  Still have active mets but also still here and feeling good.  Anyone else?



Maggie - Stage IV (lung mets unknown primary) since July 2012

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Cynlee's picture
Replies 3
Last reply 2/8/2016 - 7:29pm
Replies by: Cynlee, JuTMSY4, Janner

Ok this may sound stupid but I'm only stage 1a from a spot on the top of my foot. The primary was about and inch or so from my big toe. I've been having pain in the joint and it feels as if the second toe joint is hurting also. It hurts to walk sometimes and at night. I really feel that my mobility is limited in the big toe joint. This has been going on for over two months. What's the chances of such a low stage going to the foot bones?  I should say also the spot on my foot came up from nothing to melanoma in less then 10 months. I thinking maybe I should get an X-ray but I don't want to look paranoid. 

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Scooby123's picture
Replies 9
Last reply 2/8/2016 - 1:26pm
Replies by: Scooby123, Anonymous, MoiraM, Ed Williams, melj, Bubbles

Hi all,

I would like to know if now the combo treatment is available in some country's , if you have had ippi would you not get the combo ipp - nivolumab . We have not approved combo in UK as yet I think September I believe correct me anyone if I am wrong . But was wondering now that combinding treatments is better would you not get it if you had it on its owne. Plus you would have had to respond to the treatment as well otherwise they would be no point giving you together if you have not responded to one. I am not sure how it all works but would love some feedback from anyone who does

love and prayers to all us fighting and our caregivers


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Anonymous's picture
Replies 5
Last reply 2/7/2016 - 7:22pm
Replies by: Anonymous, Janner

I had my tumor from my back removed in october. Do they keep this tumor or just throw it out. They never tested to see if I was Braf and I was wondering if I still could have a second opinion on pathology if the tumor was kept in a lab. I know it's late but I'm starting to doubt the pathology. It was positive for melanoma but was not really that detailed a report.

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jae p's picture
Replies 11
Last reply 2/7/2016 - 9:16pm
Replies by: CHD, jennunicorn, WithinMySkin, Anonymous, Janner, gregor913

Hello to all! Well, this month marks my 2 year anniversary of being diagnosed with stage 2A melanoma at age 24 (I'm 26 now) -- 1.2 mm, mitotic rate of 2, and ulcerated.  

Lately I've been having a whole lot of anxiety over the whole "ulcerated" thing, now that I'm approaching two years on.  I don't know a whole lot about prognostic factors, but what I do know of ulceration haunts me.  

In the past month, I've floated the idea of getting a CT scan just to check up on the state of my health by the melanoma specialist and the oncological surgeon (I'm with Dr Pavlick at NYU Langone).  However, despite my having been stage 2A, they're both incredibly confident about NOT putting me through any unnecessary scans and have told me as such.  I've asked them both twice, and they've told me this twice.  They both want me to continue seeing them, but all they do is palpate my lymph nodes and do blood tests every six months.  

I love their assuredness, but is this lax approach the general protocol for my stage?  I keep feeling like I ought to be proactive and be sure I'm doing everything I can to "catch" anything early, but maybe I'm misguided in thinking of scans as the way to go. I have no idea!  My prognosis just seems so dire to me lately that I feel like I should be doing... something.

Thanks for letting me blow off some steam, and if anyone has any insight into any of this... I am all ears. Thank you to all in this community for being a wealth of knowledge and compassion to each other; it's very heartening to read.

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Anonymous's picture
Replies 6
Last reply 2/7/2016 - 12:44pm
Replies by: Anonymous, Janner, btcedarr

New small (~3mm) mole noticed, a week later removed. Looked like a black sharpie dot. When zoomed into with a camera edges were not smooth, scattered dots of pigment surrounded the mark. 

Biopsy Diagnosis: Mild dermal inflammation and pigment incontinence; see note. Note: Sections of the bisected shave biopsy show a mildly acanthotic epidermis with basal layer pigmentation. The center of the biopsy shows a focus of hemorrhagic scale. There are scattered melanophages in the superficial dermis. Clinical correlation is recommended.


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melj's picture
Replies 6
Last reply 2/8/2016 - 8:43am
Replies by: JuTMSY4, Anonymous, melj, Bennickliz, mms7angels1

Does anyone have any experience of how bone mets present , particularly in the long bones of the arm ?

I've been having pain in my upper arm for two months, usually associated with movement. Thought it was a triceps strain brought on by swimming. But despite rest, ice, ibuprofen and physio the pain and discomfort persist. Deep tissue massage eases the pain but it returns within a day. Wondering if it could be a bone met as it's about 3 inches from a primary where I had a local recurrence excised last October. I'm stage 4a just started Keytruda.

Any thoughts ?

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Anonymous's picture
Replies 3
Last reply 2/7/2016 - 10:22pm
Replies by: Anonymous, Rita and Charles

My husband has been dealing with debilitating pain and swelling get in his ankles. The doctors say it's a reaction to the meds and to take benadryl. Can anyone tell me what is actually happening and if there is anything else he can do. He hates benadryl.


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